MARIELA'S STORY (a true report), ODIN III Options

[Psyche]

Mariela’s Story: a report on Motor Neuron Disease


How Argentine patients and their families cope with a crippling, progressive disease, in a world where neo-capitalist policies and powerful medical corporations destroy the hopes of  huge numbers of disabled people.

Mariela, a pretty, dark haired girl with glowing eyes, showed symptoms of her disease 14 years ago, at age twenty, when her fingers felt strange and she began to drop things. Her condition worsened, but the diagnosis of  Motor Neuron Disease (Amyotrophic Lateral Sclerosis, known in the U.S. as Lou Gehrig’s Disease, after the famous baseball player who died of it in his prime) was not confirmed for two years. Before that, she was subjected to all sorts of tests and experimental treatments. At one point, a doctor thought she had a rare form of cancer, and applied chemotherapy that made her hair fall out.  In desperation, she also fell into the hands of quacks, both in and out of the medical profession.

“I became irritable and anxious”, recalls Mariela, talking in a low, slurred voice. “I was studying Fashion Design at the Women’s Institute, and gradually I became unable to send in the sketches for the assignments. The pencil went all over the place and I’d cry my heart out.”

To make matters worse, around that time her boyfriend called it quits. “I don’t feel resentment towards him now”, whispers Mariela, with her winsome smile. “Just  rage about the State’s indifference towards all the people in my same predicament. I was so confused and frightened. There are no private associations, either, to help us cope with this illness.”

Motor Neuron Disease, or MND, is what Stephen Hawkings, the famous British scientist, has been living with for about 50 years. But his case is quite exceptional, since the average person -according to worldwide statistics- survives between two to five years.

Yet it so happens that many people, especially the young, are actually living a great deal longer with MND. If hope is not dampened from the start, and they’re shown new ways to employ their mind -intellect is not affected-, they tend to develop quite extraordinary talents. Computers and recent technology are life-savers for these people. But love and a friendly environment are absolute essentials.

Mariela has her family’s love, but her parents can’t afford the money to hire carers for her, or to pay for physical, speech and occupational therapy. They live in a poor home in the Mataderos district. “Mataderos” means slaughterhouses, where beef on the hoof arrives in lorries from the pampas, to be butchered in that area. Large fortunes are made at the meat auctions, but little of the wealth trickles into the neighbourhood, where unemployment is rife.

Mariela works at her computer, which was a gift from a friend. She smiles gratefully:  “It makes me feel free!”  One feeble finger laboriously taps at a special switch, as she writes with her onscreen keyboard. Her friend Patricio copied his own imported onscreen keyboard programme for her. He also invented the homemade finger switch, and sent one to Mariela.  People either create their own gadgets, or else bring in software from abroad, and then, if they can, they make copies for their disabled friends. Intellectual property rights are understandably ignored when the welfare of desperate people is at stake.

Proudly, Mariela’s  mother shows yellowing scrapbooks with beautiful women wearing fabulous clothes. Mariela had to discontinue her studies, yet  she kept on drawing until last year, when her mother advised her to stop. “She suffers so much when grappling with the pencil and paper. It’s very hard to accept that, with MND, no matter how hard you try, there’ll not be a better tomorrow. You have to accept that  next month or even next week, you may have lost most of your mobility.”

Mariela can walk with help, but uses a  wheelchair for outings. They don’t venture very far, since sidewalks in her neighbourhood are in bad repair, and  ramps  are scarce.  Even public buildings and hospitals lack adequate facilities; movies are out of the question for economical reasons. Mariela likes to pick out an occasional video film to see at home.

Although her speech is slurred, Mariela’s voice is sweetly feminine. She adores pretty clothes, and her young face, framed with dark curls, is alluring. She has a questioning gaze, as if doubting people’s sincerity. All too soon, they’ll jump up and say: “Look at the time! I nearly forgot my appointment...”  Mariela is used to being alone, save for her worn-out mother and kind, clumsy father. Just yesterday he spilt hot oil on the kitchen cooker, packing their small home with dangerous fumes. Mariela coughed so much that her mother had to take her out to the tiny backyard while the air was cleared.

Mariela’s mother, Haydée, is a hardworking, down-to-earth yet intuitive woman. She throws up her hands in amazement at technology: “Everything Mariela does today, is thanks to her computer!”  Mariela doesn’t have much software, but she designs flyers for her father, who does odd jobs as an electrician to supplement his meager pension.
When she can afford adequate software, Mariela plans to complete her course in Fashion Design.  That’s her real ambition, she explains with difficulty, smiling all the time. She doesn’t quite know what it’ll involve or whether it’s just another dream. Mariela dreams a lot. Lately, she began to write poetry. She refuses to use her wheelchair in the home, preferring a high-backed office chair that was also a gift from thoughtful friends.

Mealtimes are  problematic: Mariela spills most of her food on the table and floor -like a two-year-old child-, but only when she’s very tired and hungry will she allow somebody to feed her. She won’t ever, ever eat in front of visitors: “I think perhaps they’ll feel ashamed of me, since I even get food on my cheeks, and lots of it dribbles down my chin. I can always tell when people are uncomfortable and wish they were elsewhere.”  Mariela’s whimsical smile returns, “That’s their problem, of course!”

Theoretically, Mariela is covered by the elderly people’s State health plan. But her mother is  very disparaging of those doctors. “They’re always in a hurry. They say frightening things and walk out, as if a young person is none of their business.  But it’s the only option to get some sort of free health care. I dread the thought that one day Mariela might have to be put in a geriatric home.  I’ll go to any sacrifice to stop that!”

“Most doctors have never met a young person with MND”, she continues. “I suspect they try to hide their ignorance by rushing off. The State doesn’t even provide adequate wheelchairs.  The family of a boy who died, Mariela’s great friend Patricio,  gave his wheelchair to Mariela. But of course it doesn’t have any technological appliances. It isn’t even motorized.”

A multinational pharmaceutical firm produced an expensive new drug for Lou Gehrig’s Disease.  After months of fighting State burocracy to pay for the medication, Mariela took it and  became quite ill: “I felt nausea and just wanted to sleep. My lips and tongue became numb.” She stopped it.  “I think harassed doctors are pressured by corporations into prescribing these dicey drugs. It’s a medicine that  ruins one’s quality of life and doesn’t  prolong it more than 3 months, on an average.”

“What enrages me”, adds Mariela’s mother, “is that the IMF, the World Bank and governments decide everybody’s fate. While Argentina must pay off a monstrous debt, people like ourselves fight to survive. The streets are full of child beggars and unemployment is at 14%, and climbing. Corruption is rampant. The gap between rich and poor widens. Global monetarist policies are cruel and inhuman. Why don’t these neo-capitalist economists visit us in our homes?

Mariela’s mother exercises her daughter, massages her limbs to improve circulation, and taps daily on her chest to free her lungs from dangerous secretions. The paradox is that, at the onset of her illness, doctors predicted a life span of four years. Yet with loving care and new interests she’s not even totally disabled after fourteen years.

Mariela’s best friend, Patricio, died of MND, aged 29 years. He’d had a more serious form of the disease, but he, too, had led an active life, using a speech synthesizer to give lectures on Argentine writer Borges in a private school.  One winter’s dawn, after a wakeful night, he appeared to go into a deep sleep,  which  turned  out  to  be  heart  failure.  “I’d  offered him tea”, said Patricio’s mother sadly, “and when I came back with his cuppa, he’d gone.”

Mariela’s family didn’t have the heart to tell her the truth. Patricio and Mariela used to communicate daily by e-mail. So the family decided to say that Patricio had gone to England to receive better care. But Mariela figured things out for herself, and in the next  issue of “Challenges” -the magazine she and Patricio had edited together- she wrote this simple poem:

My Best Friend

You visited me one night,
filling an emptiness
that brought me delight
for the rest of my days.
Like angels' wings in evening dew
-nobody can ever guess-
my joy at having known you

…my best friend…

I miss our letters,
shared daydreams,
pains and pleasures,
the golden beams
of moonlight on my sweater,
when we whispered
about love’s treasures.

Now that we’ve parted
I know,  with all my heart,
that our spirits will transcend
every sorrow, and you’ll always be

… My Best Friend.  

                               

(Poem by Mariela, translated from Spanish).

By Psyche


Copyright: Sylvia Maclagan, Buenos Aires, Argentina, 2006.

[Cleo_Serapis]

Thank you for your entry into Odin's Opposition!  :troy:

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Best of luck in the battle!  :vic:

~Mosaic Musings Staff